續：子女有"大腦麻痺症"的家長站 (2)

jor_mankiu

回復 sarahkyu 的帖子

i would strongly suggest you to keep working as much as you can, if you can find a reliable helper to help you. In my first son's case, i quitted and went to therapies with him all the time. I must say it was quite depressing, because i was always looking for ways to help him, taking him to different therapies. But at the end he just wasn't doing as well as other kids. The more you see, the more you compare with other kids, the more depressing you get. Yes he improved, but i don't know if it was because of therapies or because he just naturally grew out of it. but because i was too focused on him, i feel stressed out and with less financial freedom it's not good for the family as a whole. I find that now when I'm back to work full time, it's the best relief from the pressure at home. yes, most people find that work is work and would not be fun, but if you have even worse things to deal with at home, it's better to stay at work some time!!

jor_mankiu

回復 sarahkyu 的帖子

for my eldest son, he did physiotherapy and craniosacral therapy when he was young. Later when he was ready to talk, he also went for speech therapy. Now he's talking very well but he's now at the age when he's supposed to write but his gross motor and fine motor both very weak, he needs to go to occupational therapy, physiotherapy and sensory integration sessions every week. all private. it's soooo expensive. With my 3rd son in this situation, I just cannot stop work!!

QQP

回復 sarahkyu 的帖子

HELLO!

你好呀, 雖然大家在走一條難行的路, 但都叫好彩有同路人, 得閒分享吓, 互相支持啦.
其實腦傷的兒童有好多, 各有唔同形式, 請問小朋友大概因咩事腦受損呀? 有冇腦抽筋?
見你在另一個POST 問 MRI. 要知道大概咩種類先可以俾到更多意見你喎.

我的小朋友因為基因異常, 會令佢哋腦及神經有持續性損害的奇怪發展, 現在沒有活動能力, 食唔到嘢, 睇野反應極慢, 可能只見到黑影, 醫生話冇得醫.  雖然係咁, 我都會珍惜共處的日子, 我冇辦法變番佢做正常小朋友, 但都希望盡量俾到一個快樂的童年佢.

有緣今世遇上都係大家的福份, 唔好計啱定錯, 有病都唔係你同佢想的, 互相愛護係人生艱難路上最重要的依靠.
希望你盡快回復心情, 繼續開心上路, 路上與家人互相扶持!  

sarahkyu

jor_mankiu

我地都計過唔做野真係唔得,大家都好大壓力,所以點冇時間,我都會做下part time,
d私人訓練真係好金,仲要係長時間!
咁你大仔果時有冇排政府訓練?

HI,QQP
可以係呢度分享的確幾好,因為同身邊D人講,佢地都唔知係咩,跟住仲要解釋,已經唔想成日提住,每講一次自己就唔開心一次,唔係咁想!
其實都仲未知我女咩事,要照左先知,佢係發展慢,眼科醫生話佢眼球正常但好似睇唔到野同斜視,就懷疑佢係CP,叫我地去照下!
星期一照,希望唔好打風!!
唔知係咪生佢時焗到,因我係開到一半生唔到要開刀!!

QQP

咁星期一去照會好快啦, 唔好太擔心.
其實現在的醫學都好發達, 其實bb因為出生焗到而cp 的機會率都好低.
既然唔知, 都唔好亂估, 嚇壞自己冇益.
睇下醫生照咗報告講咩先再算!

cindy1227

你好我侄仔都係一樣，可否分享多一些成長路呢

cindy1227

各位家長你們小朋友是否有做腦積水分流加裝分流器，對積水有否幫助呢？

jor_mankiu

@cindy1227,  我個仔曾經有腦積水但冇惡化，做咗兩次體外腦積水分流之後唔需要做長期體內分流器，其實呢個應該係睇佢頭圍有冇不正常地大，如果有，就一定要做，你bb情況如何，有分流器照顧上會麻煩啲 ，但如果腦吸收唔晒啲腦水，都冇得揀唔做，所以好睇bb情況

cindy1227

已經照左腦仔，等報告出。希望一齊順利啦我唔bb再一次受苦